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IN2023,WEWILLBEREACHING OUTTOEVERYONEONTHE RETTREGISTRYUKTOOFFER THEFOLLOWINGHELP:
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IN 2023, WE WILL BE REACHING OUT TO EVERYONE ON THE RETT REGISTRY UK TO OFFER THE FOLLOWING HELP:
For all those who have never been tested for mutations in MECP2: template letter to give to your GP plus letter of support from Reverse Rett and Rett UK explaining why this is important
For all those who have never been tested for mutations in MECP2: template letter to give to your GP plus letter of support from Reverse Rett and Rett UK explaining why this is important.
For all those who have had a positive test but do not know the result:
For all those who have had a positive test but do not know the result:
If they have the results letter, they can send their results in for us to interpret.
WHYISTHISIMPORTANT?
WHY IS THIS IMPORTANT?
Gene therapy is a genetic based treatment and therefore gene therapy for Rett syndrome will only be useful for patients who have a confirmed mutation in the MECP2 gene.
Gene therapy is a genetic based treatment and therefore gene therapy for Rett syndrome will only be useful for patients who have a confirmed mutation in the MECP2 gene.
However, companies seeking to market drug treatments for Rett which are not genetic based therapies could also use the MECP2 confirmation as part of the eligibility criteria for access to new medicines
However, companies seeking to market drug treatments for Rett which are not genetic based therapies could also use the MECP2 confirmation as part of the eligibility criteria for access to new medicines.
Template letter for those who do not have their results letter to send to their GP
If they have the results letter, they can send their results in for us to interpret.
Template letter for those who do not have their results letter to send to their GP .
WWW.RETTREGISTRY.ORG.UK
